A little over a year ago “Captain America: The Winter Soldier” came out. I wanted to be there for the midnight showing like I had with most films of the genre. But I wasn’t home, hadn’t been for a few months and ended up seeing it the Monday after.
I guess the story was supposed to end there. I mean I liked it but it was just a movie I watched at the theater.
But a month afterwards my already upside-down world was flipped once more.
(Okay now I need to back up because just imagining if the previous metaphor is correct is making my head hurt.)
In late 2011 my mom was diagnosed with Waldenstrom’s Macroglobulinemia, a rare form of lymphoma. Her treatment consisted of 3 years of chemo, the last treatment would have been last September, but then 2014 happened. After many visits to the ER, lumbar punctures, CT scans, MRIs, and blood draws they found that the cancer had filtered through her spinal fluid and into her brain. This filtering is referred to as Bing Neel Syndrome which is even rarer still (From its discovery in the 1930’s to the time that her spinal fluid tested positive for cancer cells there had been less than 40 diagnosed cases).
She was offered a treatment that had proven somewhat helpful to other patients. It was extremely painful but my mom went through it like a true warrior. The weekend that TWS came out was supposed to be her second to last. I was out with friends when my aunt called to say that the chemo had been postponed because my mom had gotten an infection.
Like I said before, I went to see the film on Monday, my mom got better, and finished her treatment.
That should have been the end of the story, but few weeks after she relapsed. She was weaker because of the treatment and her pain increased daily.
We spent Mother’s day in the hospital. Just her and me. Her family and grandkids far away. As a treat she and all of the other mothers in the hospital got a slice of flan and a pretty blue box with hospital stationary. I promised to take her somewhere special for her birthday to make up for it.
At the end of May I was supposed to go to Los Angeles for a week-long intensive prior to starting an online screenwriting program. Mom never asked me to stay but rather pushed me to continue when I doubted I could. I don’t know if I’ll ever be able to convey what an awesome lady was the one I got as a mother. She was the toughest, kindest, funniest, most loving person I’ve ever known (I feel myself blessed to have had one person as such in my life).
While in Los Angeles I called to check-in and found she was no longer at the apartment but had been rushed to the hospital once more. When I called the hospital room my aunt answered saying my mom would not be able to answer and that I would find out more when I returned. What I did not expect was that a clean-room would greet me when I returned to Mexico City.
I slept in the hospital the following week thinking that it would only be a few days before she was discharged, but days became weeks. On her birthday I made white cupcakes with white frosting, my aunt got cake for the nurses, and someone from the Nutrition Department got her balloons.
One of those nights when the only lights in the room came from her IV pump and my iPad’s screen I was bored and looking for something to read. However I was not in the mood for another women’s fiction, Lifetime movie, kind of deal. (The romantic notion of terminal illness, future orphancy, etc. often found in romantic film and literature is lost after you see the real thing.)
And then I remembered my cousin mentioning how her boyfriend would get graphic novels into his Kindle. I decided if I had liked the movie I might like the (comic)book it was based on. So after some investigation I found that it had been based on a particular story written by Ed Brubaker. I read the entire book in a matter of hours (Should I point out that I’m team Bucky?).
Next morning I bought the following volume but during the day got the worst news from the doctors. There was nothing more they could do, she could either spent her remaining time in the hospital or at home (well, the apartment in Mexico City anyway). I never thought I’d be overcome with sadness over the fact that she’d never ask me to straighten up while I tried on a wedding dress or that I’d never have the chance to hand off a screaming infant for her to calm down with her singing. I cried myself to sleep in the empty apartment but then woke around 2 a.m. and re-read the first volume and then the one I had purchased earlier that day.
Mom being moved to home care was a challenge. I had to learn to deal with nurses coming in and out, my mom’s ever changing moods and the knowledge that we didn’t know how much time we had left. Everyone tried to make my birthday special but at one point I ended up hiding in my room crying alone. I heard her wheelchair enter the room, she hugged me, and cried too. After that day she started sleeping even more and talking even less.
On August 1st I went to the theater with my aunts and cousin like we had at least twice or three times a week. They all went to see a Diane Keaton comedy but I went to see Guardians of the Galaxy in 4D. I had never been to a 4D theater but figured this was the film to see it in (I’ll eventually write more about that experience).
Now before I talk about my experience watching the film I’ll paraphrase a comment I saw posted online a day or two after: a gentleman wrote somewhere that as the husband to an ER nurse he was so sick of seeing scenes like the one which launches GOTG. He said it was so unrealistic in terms of hospital policy bla, bla, etc, etc.
Unlike the gentleman, I was bawling in the theater. Because to be honest I didn’t care to see true hospital policies and behaviors considering I was there to watch a movie about space pirates that included an adorable tree thug and a universe weary raccoon. But little Peter Quill refusing to hold his mother’s hand as she’s dying was more true and real to me than if I had seen a full nurses’ station or only one or two visitors allowed in the room of a terminal patient. It certainly was more real than the pretend sadness I’m supposed to feel while watching a made-for-TV movie that is only using terminal illness as a cheap way to get a reaction out of me.
I don’t think I need to go into detail about why I loved the rest of the film, at least not this time.
That was Friday.
On Tuesday night I noticed something was off with my mom. I listened as the nurse kept checking her vitals all through the night. By morning I knew it was only a matter of time.
A few hours later, while I sat next to her bed and turned up the volume to “A Hard Day’s Night”, her beautiful soul left this earth.
It’s been eight months since my mom ended her war on cancer.
There are moments when something good or terrible or funny or surprising happens and I think OMG when I tell Mami this… and then I look up and know she knows already.
I’m still reading graphic novels but I’m not sure I’m a true official fan yet. I’ve wandered through Tumblr but have yet to understand how it works (and frankly I’m a little scared of it).
Last New Year’s Eve I was wasting time around the mall before heading over to mass. I saw a sale sign outside Hot Topic so I went in. While digging through a pile of t-shirts I found a Bucky -as-the-Winter-Soldier shirt. When I took my findings to the lady at the counter I could tell that she’d witnessed my little dance of joy a few moments prior.
So why am I writing this now?
Three weeks ago I watched the entire first season of Daredevil during a crazy Netflix Weekend Binge. Now I don’t know if it had something to do with me giggling by myself while watching the conversations Matt has with the priest but I completely believed the whole thing. It reminded me of The Wire but set in a much more relatable world. Now how is it that I felt that a show based off a graphic novel was more real than one based on true crime journalism?
I don’t know.
How is it that I found much more comfort in my time of need from a fantastical world full of superheroes and supervillains than in any of the self-help books or the people in my life?
Maybe someday I’ll discover there’s an Anthropology PhD dissertation with loads of numbers, statistics, and quotes from psychologists. But right now I don’t have an answer.
What I can’t do is say it’s just a comic book or just a movie, TV show, song, book, fairytale, etc.
Because to someone out there it can be the only hand reaching out to them while their hanging off a cliff.